Monday, February 22, 2010

at 24 months...

At 24 months...

  • I LOVE animals, especially Aunt Sharon's doggie, Sydney. "Pet her," I say.
  • I weigh 27 1/4 lbs (50-75% percentile).
  • I'm 34 1/2" tall (50-75% percentile).
  • I can sing my A,B,C's & Twinkle Twinkle Little Star perfectly, even with the right notes! I also know most of the words to "Come Thou Fount of Every Blessing," "Holy, Holy, Holy," and the Lord's Prayer! Music is definitely MY thing! (I wonder why...)
  • I can point to & recognize almost every letter in the alphabet! (Mommy thinks I'm one smart little girl!)

  • A fun idea to me is playing play-dough together with Nanny. (although I still refuse to learn my colors...except for pink!!) :)
  • I'm talking in complete sentences! (ex. "Mommy has glasses on." "Mommy, I want to get down please." etc. etc.) Language is an AMAZING process to watch.

  • I LOVE to play and explore! (here I am at the interactive children's museum in our town. I loved to crawl in this little cubby of the "Big Red Barn" and play with the chicken's eggs!)
  • My new-found love is to push a chair up to the kitchen counter and get into the top cabinets...
  • I'm a very sociable girl. I tell everybody "hi." After my bloodwork at the doctor today, I said, "Thank you, doctor." ha! Other words to describe my personality: active, VERBAL!, sweet, understanding, smart, & inquisitive.

  • I'm a pour-the-sprinkles-onto-my-cupcake-kind-of-gal! (and then knock the entire cup of sprinkles onto the floor!) I had fun at my friend's birthday party this weekend. (Jonathan was born the exact same day I was!)
  • I absolutely LOVE it when the RUF college students come over to our house!
  • And regardless of how many hairs I do or don't have, I am my Mommy & Daddy's beautiful princess!

Update: Where to start?? Well, it's been a really rough week emotionally. (although it was wonderful having Caroline's birthday to take our minds off of things!) Our dermatologists at UVa are thinking that Caroline probably has a severe alopecia. (she is down to only a few eyebrow & eyelash hairs at this point, and her hair on her head continues to shed slowly. No signs of regrowth.) With this diagnosis, it is still completely unpredictable what the future will hold for us, as I've shared before. Her hair could grow back completely. Her hair may never grow back. We don't know.

We are doing some more testing on her this week to see if there might be any other contributing factors in her system to help explain this or to help us fight this. Today our pediatrician said that Caroline's case was the first she'd ever seen in her 12 years of practice here in town. (though she'd seen it once before in her time in Ohio.) It was an answer to my prayers when she started talking about the possibility of helping refer us to Johns Hopkins or someplace in the area that might be able to give us a solid second opinion. So our journey continues... I'll keep you posted.

Ways you can pray:
1) pray that the extra testing this week might help us know what's going on or provide any extra insight
2) pray that the Lord would give comfort, peace, strength, & rest to me & Marc (thankfully, SHE is as happy as can be & oblivious to the whole thing! It's Mommy & Daddy that are having the rough time!)
3) pray that God would give us wisdom to know what steps need to be taken next, and that He would continue to guide us through this tough time
4) pray that we would find a healthy balance-- all of this is terribly time & energy/emotion-consuming and it's hard to think about anything else right now! There's a fine line between being Caroline's advocate and being overly consumed, and I'm afraid I'm not doing well at finding that balance.

We know the Lord is growing us in ways we never dreamed. In part of this, I am being challenged on my ideas of beauty and the value I hold on it. ("Beauty is fleeting and charm is deceitful, but a woman who fears the Lord, she shall be praised." Prov. 31) Pray that my desire for Caroline to be a godly woman would outweigh the desire for her to be physically beautiful. (although I still think she is beautiful girl!!!) If the way God wants to work in my daughter's life to bring her to Him is without a single hair on her head, pray that I would rejoice in that above all else.

Thank you for thinking of and praying for us.
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  1. We are praying for all those things. And foremost that God's will be done in all your lives. Mommy, Daddy & Caroline and her other family members. We love and care too. We are all going through an emotional upheaval right now. But, Caroline you are the most beautiful little princess that I have ever seen. You always will be, hair or not hair. We love you all, unconditionally.

    Nanny & Papa

  2. Hi Amy and Marc,

    I used to work with Callie Norris. One slow day at the lab she told me your story (which is beautiful) and showed me your blog (which is adorable) and now I make sure to pop over very now and again to see how Caroline has grown.

    Congrats on being parents of a 2-year old! She is beautiful and looks incredibly happy! I'm sorry you are having to deal with this hair loss. I will pray that God shows you how best to handle the situation and gives you the tools that you will need.

    Jennifer's 2 cents: She is already gorgeous and hair is certainly not necessary to be a beautiful woman.

    Good luck with everything!

  3. hey y'all,
    i'm praying for y'all. strength for today and bright hope for tomorrow...

  4. In my humble opinion, true beauty (assuming there is such a thing) is humanity grappling with difficult circumstances and somehow finding meaning in the process. We see this in art, literature, health, science, religion, and every area of human activity. All that hifalutin mumbo-jumbo aside... Caroline always has, and always will, be beautiful. She's a miraculous gift, and giving itself is pure beauty. Hair has meaning (and, in our culture, admittedly, very significant meaning, particularly for females, so I genuinely understand your pain), but it doesn't _give_ meaning; people -- their love, respect, and compassion -- do that. I wish I could say or do more, and please let me know if I can.

    Warm love,


  5. You are constantly in our prayers and hearts. The problem with photos is that they cannot capture true beauty, but only the superficial kind. To be with Caroline is to experience her joy and radiance in ways no photo can capture and none but the most callous could ignore.